About Us

More than 20 million people over the age of 20 in the U.S. have Chronic Kidney Disease (CKD). Because CKD patients have multiple comorbid conditions they see numerous healthcare providers. Poor communication between physicians as well as different electronic health records systems create fragmented patient care, resulting in suboptimal clinical outcomes. A CKD registry in development in Delaware seeks to join electronic health records of multiple sources to improve coordination of care. A team of patients, clinicians, and researchers will collaborate to gather information and facilitate Patient-Centered Outcomes Research (PCOR) based on the CKD registry.

The aims of our project are to understand which outcomes and research questions patients, physicians and payers are most interested in, what additional data would be important for PCOR, and to solicit feedback on research designs, privacy issues and data sharing in the context of PCOR. We will address these objectives through two conferences and a community academic workgroup.

The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions.

The registry-related project work is supported by an Institutional Development Award (IDeA) from the National Institute of General Medical Sciences of the National Institute of Health under grant number U54-GM104941 (PI: Binder-Macleod).